Isla’s Sensory World

 

If you spent some time with our 9 year old daughter Isla you would soon see an example of what Sensory Processing Disorder (SPD) looks like. Her body is under constant attack from a dysfunctioning sensory system that can’t regulate itself automatically. Or to put it more simply, her brain has trouble receiving and responding to information that comes through her senses.

Isla has autism caused by a chromosome deletion (2q23.1 Microdeletion Syndrome, recently known as MAND).

If Isla is happy or excited, her whole body tenses while she brings her arm to her mouth and makes a noise I can only describe as “eeee”. Her brain knows she is excited but her body also needs to “feel” that she is excited.

She is constantly on the move trying to feed her body the input her vestibular and proprioceptive systems need to feel balanced and in control. She will touch everything, moving aimlessly from one item to the next, sometimes licking things, chewing things and climbing things. A bit like a toddler exploring the world. She also tends to burp loudly and constantly when under sensory stress.

When out, with a lot going on, this balance is harder to achieve. Isla will sometimes go into a wandering trance, not able to focus on what she is doing as her sensory system is being bombarded.  Or she will shut down, be overwhelmed with tiredness, lie down and go to sleep.

At home she needs an activity to keep her grounded. The iPad is highly visually stimulating for her and unfortunately also very addictive. She spends way too much time on the iPad but by having her sensory needs mostly met she is able to relax and sit still. However there is still some capacity for further oral and tactile stimulation though as evidenced by chewed chargers and ripped books that may be in her vicinity.  She mostly does this without even realising but it is also due to a lack of impulse control.

With a sensory system that needs a lot of input, it may be surprising that Isla is also hypersensitive to many things including loud rain, noises, bright lights, her hair or teeth being brushed or a lot of adults talking. This will cause her to cover her ears, run away, cry or panic. The way she experiences pain and getting a fright are also unique and are sometimes such a shock to the body that will trigger a seizure.

The way this sensory imbalance affects Isla can be hard to predict. If some of her sensory deficits are being met she is sometimes able to handle her hypersensitivities. For example if jumping at a trampoline park she will be okay with the loud music and crowds. By keeping her body moving this helps balance things out…sometimes.

What have we found helpful?

SPD has always been part of Isla’s life. She does not know what “normal” feels like so does not realise how challenging her SPD is for her. She does now get anxious though about feeling a certain way that can make it hard for us to get out and about.

The biggest thing that has made a difference is Isla’s service/assistance dog Bo. Her Golden Labrador provides many benefits. Keeping her on track when walking, having a safe, comfortable place to lie when feeling overwhelmed and providing a hairy coat for tactile sensory input. He also alerts people to the fact that all is not as it seems, keeps her asleep all night and provides unconditional love.

We have found a chew necklace sometimes helps provide oral input and helps keep her quiet if we are at the movies for example.  It is clear to see how much input she needs by her excessive chewing which unfortunately also causes a lot of drool!!!

A winter pom pom hat covers her ears in bed and helps to block out the noisy wind and rain.  She doesn’t like the feeling of ear plugs or ear muffs even though we have tried a lot of types and varieties.

Medication has also helped with severe anxiety that had led to seizures in the past.  Isla is on Fluoxetine. For more about this click here to go to a blog I wrote about medication.

To read more about and Isla and her Assistance Dog Bo click here or please visit www.simplyisla.com to learn more about our journey with autism and living with a Chromosome Disorder.

Welcome to Voices of Special Needs Blog Hop — a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and Mommy Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo — from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month’s Voices of Special Needs Hop? Click here!

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Published by Sara Stythe

Hi my name is Sara Stythe and I am a mum of 3 beautiful girls. This is a place to share knowledge, resources and information I have learnt along the way on this unexpected journey with our unique youngest daughter. Isla is missing a tiny bit of her 2nd chromosome (2q23.1 Microdeletion Syndrome, recently known as MAND) causing autism, epilepsy and development delay. If you would like to receive my new blog posts by email you can subscribe. Thank you

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